On April 9, 1982, a woman in a Bloomington, Indiana
hospital gave birth to a son who was quickly diagnosed with
Down syndrome, a chromosomal abnormality that produces
mental retardation, and with esophageal atresia, the
separation of the esophagus from the stomach, which
rendered the newborn unable to absorb food. The
obstetrician who delivered the baby told the parents that
their child would have only a 50 percent chance to survive
surgery for his atresia of the esophagus, and that even if
surgery were successful, their child would remain severely
retarded and would face a lifetime of medical treatment,
disability, and dependency. He advised the parents to
withhold treatment and let their child die of his birth
defect. However, two other doctors, a pediatrician at the
hospital and the family's physician, disagreed with the
obstetrician's assessment of the newborn's prospects and
called for immediate surgery. Nevertheless, the parents
decided that they did not want the baby treated. The
hospital's attorney as well as outside attorneys, one of
them representing couples prepared to adopt the baby, went
to court to have him declared a neglected child under
Indiana's Child in Need of Services statute and to have the
court order medical treatment. Indiana courts ruled that
there was no violation of the statute, and that the
parents, confronted with contradictory medical opinions,
had the right to decide the fate of their child, soon named
Baby Doe by the press. One of the attorneys appealed the
case to U.S. Supreme Court Justice John Paul Stevens, but
before the Justice could hear the case, Baby Doe died of
dehydration and pneumonia on April 15.

The death of Baby Doe triggered a fierce controversy
over the right of infants with congenital birth defects to
medical treatment, as well as over the right of the
government to intervene in the relationship between doctors
and their patients and in decisions by parents about the
future of their children. Conservatives, pro-life
activists, and individual physicians and health care
providers--including the nurses at the Bloomington
hospital--condemned the decision not to operate on Baby Doe
as infanticide. They demanded government regulations that
would prescribe treatment even in spite of the parents'
wishes. By contrast, physicians' organizations like the
American Academy of Pediatrics denounced government
interference with medical practice, and liberals argued
that the choice for or against treatment should be
exercised by parents, not the government. The courts sided
with the parents in the absence of explicit legal
provisions prohibiting the withholding of treatment.

As a pediatric surgeon and U.S. Surgeon General, C.
Everett Koop found himself at the center of this
controversy. During 475 operations over 35 years to
correct esophageal atresia, his success rate had risen to
nearly 100 percent for infants born full-term. Moreover,
he knew that the degree of mental retardation from Down
syndrome was impossible to predict, and that it can range
from mild to severe. Moreover, the quality of life enjoyed
by a child with Down syndrome was greatly affected by the
emotional resources of his family, by the level of
community support, and by the availability of medical and
education services. Even though Koop acknowledged that
information on Baby Doe's medical condition was incomplete--he
had to rely on press reports because medical files were
ordered sealed by the courts--Koop felt compelled by his
previous professional commitment to
saving the youngest and weakest of all patients, and by his
sense of responsibility as the nation's chief public health
officer, to speak out against the decision made by the
parents of Baby Doe.

The moral and religious tone of Koop's stance made it
suspect to many liberals and civil libertarians.
Nonetheless, in his view, the nation's medical and legal
system had clearly failed to protect Baby Doe both as a
human being and as an American citizen against neglect and
discrimination. His concern became even more urgent when
on October 11, 1983, a girl, promptly named Baby Jane Doe,
was born with spina bifida and other complications in a
hospital in Port Jefferson, Long Island, the same hospital
where Koop had spent summers as an intern from high school
through medical school. Spina bifida, a condition in which
a section of the lower spine is exposed, can lead to
infection of the spine and brain, and subsequently to
mental retardation. Moreover, the girl had both an
abnormally small head and hydrocephalus, or water on the
brain, an unusual combination. Once again, physicians
reached contradictory diagnoses of the girl's medical
condition and made unsupported predictions of her long-term
prospects; once again the parents decided against
treatment for their impaired child. Having been deeply
troubled by Baby Doe's death in the previous year, Koop
interceded more directly in the case of Baby Jane Doe. He
called the physicians involved and attempted,
unsuccessfully, to have her medical records subpoenaed and
to compel treatment for the child in spite of her parents'
stated preference. Once again, treatment was withheld
while medical and legal disputes were fought out. Even
though Baby Jane Doe survived, the delay in treatment kept
doctors from preventing an infection of her spine and a
subsequent inflammation of her brain, which in turn left
her severely retarded.

As a surgeon Koop agreed with his medical colleagues
that only an attending physician can make an accurate
diagnosis of a child's birth defects and chance of
survival, and that such determination had to be made on a
case-by-case basis. Yet, as a public health officer and as
a physician deeply concerned with the ethics of medical care,
he also felt that the life of a baby born with
congenital birth defects should be protected, especially
when there were contradictory medical diagnoses and when
there was no scientific way to predict the child's future
quality of life. As Koop summed up his position, "we ought
to do things to give a person all the life to which he or
she is entitled, but not do anything to lengthen that
person's act of dying." The right of government to
override the rights of parents had been established in
several areas, including truancy, child abuse, and
immunization laws, and it should extend to the protection
of children with birth defects and disabilities as well, he
argued.

Thus, with some misgivings, Koop supported regulations
drawn up by the Department of Health and Human Services
(HHS) that prescribed in detail the provision of medical
care to newborns with congenital birth defects. The
regulations were later overturned by the courts for unduly
restricting a doctor's medical judgment, a ruling with
which Koop did not disagree. Then, after consulting
proponents both of government regulation and parental
choice, Koop drew up his own plan to prevent future Baby
Doe crises. His plan centered on creating hospital-based
patient-care committees of up to fifteen members, including
community representatives, responsible for advising on the
medical treatment of babies with birth defects. Like the
HHS regulations, Koop's plan did not withstand legal
scrutiny, because it infringed on the autonomy of doctors
and parents. In the face of these failures, supporters of
legal protections for disabled children next turned their
attention to Congress, which in October 1984 extended the
definition of child abuse in federal law to include the
denial of fluids, nutrition, and medically indicated
treatment for infants with birth defects, and required
states to implement procedures for reporting and
investigating such cases of neglect. The adoption of the
"Baby Doe amendment," as it was called, was the culmination
of an extended, often bitter debate over the medical rights
of newborns, a debate that centered on the extent of
government authority, the meaning of citizenship, and the
value of human life.

Surgeon General Koop continued to champion children
with disabilities, an issue with which he had long been
involved as a pediatric surgeon. He organized a workshop
on respirator-dependent children in December 1982, which
explored ways of caring for these children in their own
homes rather than in hospitals, and making Medicaid funds
available to pay for long-term home care. One of the last
conferences he convened was the "Surgeon General's
Conference on Growing Up and Getting Medical Care: Youth
with Special Health Care Needs," held in March 1989. In
numerous speeches Koop urged policymakers, physicians,
health care administrators, educators, and the public to
recognize the dignity, rights, needs, and capabilities of
children with life-threatening birth defects and other
impairments. A growing number of such children were saved
by advances in medicine, but were left with disabilities.
Throughout his eight years as Surgeon General, Koop was the
most outspoken and persistent government advocate for
increasing access to medical and health care, educational
opportunities, and employment for these children.